Endometriosis: the most common myths debunked

Do you suffer from unbearable menstrual cramps or unexplained abdominal pain? It's possible you could have undiagnosed endometriosis.

The condition is thought to affect around 1.5 million women in the UK, but it often goes undiagnosed, with many women assuming chronic pain is something they have to live with.

What is endometriosis?

Endometriosis is a common condition where cells similar to those found in the womb grow elsewhere in the body. This can cause pain in the abdomen, lower back or pelvis, painful periods and pain during sex.

On average it takes 7.5 years from onset of symptoms to get a diagnosis, but help is available. We get the experts to set the record straight.

Myth: Endometriosis is just painful periods

'This is not true. Although painful periods can be one sign, symptoms vary from person to person, 'says Eleni Mavrides, consultant obstetrician and gynaecologist at The Portland Hospital for Women & Children.

Some women will experience spotting and irregular periods, others could have constant pain.

'For example, some women will just experience spotting between periods and irregular periods, others could have, constant pain during the cycle, pelvic pain or pain during sex, and musculoskeletal issues such as back pain are also not uncommon symptoms.'

'Women with endometriosis may also experience pain and bleeding when opening the bowels but this is usually only in the more severe cases.'

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Myth: Endometriosis is hard to diagnose

'Unfortunately this sometimes rings true in experience. Symptoms vary from person to person with the result that by the time they get to me many of my patients have already been given a number of different diagnoses and tried lots of different remedies,' says Cecilia Bottomley, consultant gynaecologist at The Lister Hospital.

In some cases, if there are ovarian cysts, endometriosis will show up on an ultrasound scan.

'A gynaecologist can diagnose endometriosis in a number of ways. In some cases (for example if there are associated ovarian cysts), endometriosis will show up on an ultrasound scan,' she adds.

'In other cases you may be provided with a diagnosis based on your symptoms or the gynaecologist examination findings, or a surgeon may perform keyhole surgery (a laparoscopy) to find the affected tissue.'

Myth: You just have to live with it

'This is not true. Although painful periods are something that many women will experience at some point, for people with endometriosis it can be severely incapacitating and even affect relationships or the ability to hold down a job – the impact on mental health too can be huge,' says Mavrides.

'I meet many women who have either not sought help, thinking nothing could be done, or haven't been able to access the best advice.'

'The bottom line is that you know your body best – if you think something isn't right, ask to be referred to a gynaecologist,' she adds.

Myth: You're on your own

'While there is no absolute cure, there are ways of managing the endometriosis and coping with the symptoms to reduce the impact it has on quality of life,' adds Cathy Dean, specialist endometriosis nurse at The Portland and Princess Grace Endometriosis Centre.

There are ways of managing endometriosis and coping with the symptoms to reduce the impact.

'I would advise women to take advantage of support and advice from health care professionals, particularly endometriosis specialist nurses. Endometriosis UK provide online and telephone support, and attending support groups can also be helpful for many women. I would always urge women to use these resources rather than try and cope alone.'

Myth: A hysterectomy is the only cure

'That is a common myth that I hear a lot. A hysterectomy (removal of the womb) used to be one way of treating endometriosis, but treatment has come a long way since then,' says Bottomley.

'There are methods we can try first, such as a hormone containing intrauterine system (coil) or a combined contraceptive. In more severe cases we may use monthly injections for a few months to suppress the disease and the symptoms.'

'Most cases of endometriosis can be treated medically,' agrees Mavrides. 'However if medical treatment fails, surgery is an effective way to treat the condition. Keyhole surgery through the tummy can remove the endometriosis spots, improving the symptoms of pain. Around 10 per cent of cases are deep endometriosis (stage 3 and 4) which can involve bowel or urinary tract problems, and surgery in these cases can be more complex but still achieved through keyhole.'

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Myth: There is no pain relief

'The pain associated with endometriosis can be debilitating, with some women experiencing it all the time, and not just during their periods. As a starting point I would recommend over the counter medicines such as ibuprofen and co-codamol,' says Mavrides. 'If the pain continues or increases you should visit the GP for stronger painkillers, such as tramadol.'

The pain associated can be debilitating, with some women experiencing it all the time.

'Your GP can also advise on hormonal treatments,' she adds. 'For example, if your pain is worse during your period, work with your GP to safely reduce the number of periods you have – say from 12 to 3 a year, using the combined contraceptive pill. Or stop your periods altogether using the hormone containing coil or the implant which are also safe and effective ways of managing the pain.'

Myth: Endometriosis makes you infertile

'While endometriosis is often associated with infertility, it's very difficult to be sure if it's a direct cause,' says Mavrides. 'In my experience endometriosis is only generally a contributing factor. In the majority of cases of infertility a combination of issues are at play.'

'Having said that, in the most severe cases of endometriosis women can develop cysts on their ovaries (endometriomas) which impact on fertility,' she adds. 'For some women, removing these can dramatically increase chances of natural conception.'

Myth: Getting pregnant cures endometriosis

'This is not usually true and can be a very insensitive thing to be told especially if the woman is not in a relationship or emotionally ready to start a family!' says Bottomley.

For some women preventing their periods does alleviate symptoms.

'For some women preventing their periods (whether by being pregnant or using the pill or hormone containing coil) does alleviate some of the symptoms. However, this advice just isn't practical for a lot of women, and symptoms may well return after you've had the baby.'

Myth: Endometriosis is basically IBS

'Women's chronic symptoms of Irritable Bowel System (IBS) can be confused with endometriosis and vice versa,' says Mavrides.

'One woman I treated thought they had IBS for years, before they were correctly diagnosed with endometriosis. Given the proximity of endometriosis to the bowel, the condition is commonly confused with issues with the bowel. Even severe constipation can mimic the symptoms!'

Myth: Teenagers can't get endometriosis

'Endometriosis is mostly diagnosed in women aged 25 – 40, however it also often goes undiagnosed in teenage girls,' say Mavrides. 'Some can have pain for years which is usually put down as 'idiopathic' – without cause. If you think you could be suffering from endometriosis make an appointment to see your GP or arrange to see a specialist.'

Rhalou AllerhandRhalou is a Digital Editor specialising in health, fitness and wellbeing.

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